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Ogregore
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Hello - been lurking
« on: Feb 23rd, 2005, 2:11pm » |
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Hello to everyone,
I have been lurking on the board for probably almost a year - i appologize for not introducing myself earlier.
I have had CH (at least that I could identify and get a Dr to identify) for about 3 years now. Started during a period where my job had me living in hotels around the US for 6 or 7 weeks at time. I would be awakened every night with what I thought was a severe sinus headache, and would pace about my hotel room for anywhere from 45 minutes to 3 hours until it went away. Finally about two years ago after going through all the MRI, CAT scans, nasal x-rays (probably a deviated septum), I was referred to a ENT who actually flat out told me there was nothing wong with my sinuses, that I had CH. He referred me to a neurologist and he prescribed prednisone, which seemed to work. He has since left the area and I have not found another neurologist yet. I am a little uncomfortable with the way I am taking the prednisone, because although I only take 20 mg a day, I have taken either 10 or 20 mg constantly since the initial diagnosis, with no breaks whatsoever.
I am at the end (I HOPE) of what seems to be the latest cycle and when I read what some of you go through I sometimes feel lucky, most of my nightly visits are K5 to K7, had one last week that was border K9, but have also had nights where the timing (I usually get one at 11:00 pm you can almost set your clock by it)has been off. Had two last week that started at 1:30-2:00 am and ran into the next day.
I am keeping my fingers crossed because today has been the first day after about a week straight of constant HA pain (not always CH). My boss has been pretty understanding and the people who work for me know the signs that go up to stay out of my way.
Another appointment tomorrow with my GP, he knows I have CH and will prescribe the medication when I ask for it but I get the feeling he doesn't really believe the beast exists. Oh well.
I wish everyone a lifetime of freedom from the beast.
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I know that you believe that you understood what you think I said, but I am not sure that you realize that what you heard is not what I really meant.
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LeLimey
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Re: Hello - been lurking
« Reply #1 on: Feb 23rd, 2005, 2:47pm » |
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Hello ogre.. I've seen you lurking. Was waiting for you to jump out of the closet like in monsters inc!! ( I really must watch sxome grown up tv!)
The pred is a bit worrying.. how long do you take it for at a time?
Have a good read up of meds here. Pred is usually used as a very short term thing while waiting for verapamil to kick in from what I understand.
Imitrex injections are very good and my personal favourite is O2 which is a life saver.. make sure you read the Oxygen info on the left to get the right set up. You should also look at the kudzu thread as that is causing alot of interest and there is also the psilocybin thread which again is very interesting.
Let us know how you get on and welcome!!
Helen
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Sean_C
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No need to lurk my brother, just don't feed the animals 
Sean.......................
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Ogregore
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Re: Hello - been lurking
« Reply #3 on: Feb 23rd, 2005, 4:38pm » |
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Sean - I won't know the animals without a scorecard.
Helen, the Pred is what I am concerned about because I have never had a time that I haven't taken it since it was first prescribed. I originally thought I was chronic because I thought I needed the meds constantly to control it.
I have been through various nasal sprays, depakote er, and I still take an occassional Cafergot when it hits especially strong. In addition I take synthroid for hypothyroidism, between the thyroid and the no sleep I'm always tired  and cholesterol med.
My wife suggests that she thinks I also have sleep apnea (I don't seem to be keeping her up for the right reasons). I would like to try the O2, do you know if a script is needed for it or if you can just order the necessary tank, etc.?
Ogre
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I know that you believe that you understood what you think I said, but I am not sure that you realize that what you heard is not what I really meant.
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Bob_Johnson
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Re: Hello - been lurking
« Reply #4 on: Feb 23rd, 2005, 4:50pm » |
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YES! Must get off the Pred; it should be a 10-14-days run and then shifting to a preventive med.
Please turn on your printer and take this article with you to your doc. This web site worth exploring.
http://www.headachedrugs.com/pdf/HA2005.pdf
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Bob Johnson
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LeLimey
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Re: Hello - been lurking
« Reply #5 on: Feb 23rd, 2005, 4:53pm » |
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Ogre you need to get off that pred. Go back to your neuro and get something else and wean off that. Do not do it overnight, I know its a small does but you have been on it a long time and you are used to it. Its suppressing your immune system so you need to encourage that back into working gently!
I'm really worried about you taking that. I was on it for a very long time for a different illness and its screwed me up alot.
Regarding the O2 I think you do need a script for it. I do here in England. I know people there HAVE used welders O2 etc but I'm not au fait with your regulations so I'll leave it to someone else to advise you more thoroughly.. I'll just say it is fantastic for me
Look into melatonin too..alot of people here have found relife from night time hits with that.
I hope you are coming to the end of your cycle too.. but keep letting us know how you are doing..
no going back in the closet y'hear?!
Helen
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Langa
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Re: Hello - been lurking
« Reply #6 on: Feb 23rd, 2005, 7:48pm » |
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Hello Ogre...I lurked for 4 years, now I'm one of the animals...be afraid, be very afraid...
Langa
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Kris_in_SJ
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Re: Hello - been lurking
« Reply #7 on: Feb 23rd, 2005, 8:02pm » |
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Hi Ogre,
Ditto to the above - you need to get OFF of low dose continuous Prednisone. It need to be done slowly under the supervision of a doc. If you don't have a neurologist, get a GP, but go armed with information.
Read the medical info to the left, print it out and take it with you to the doc. There are medications out there that can help you. I have several good articles I can email to you. If interested, please PM me. At the very least, you need to be on a good preventative med, and you need something to abort the severe ones.
We're here for you - just ask.
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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don
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Quote:| then shifting to a preventive med. |
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You shouldn't be shifting to a preventative. You should already be on a theraputic preventative dosage prior to starting the pred.
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Ogregore
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Re: Hello - been lurking
« Reply #9 on: Feb 24th, 2005, 6:31pm » |
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Well, had appointment with GP today. He is weaning me off the pred - 10 mg/14days,5mg/14days,0mg.
He is setting up a referal for a neurologist, I feel more comfortable talking about possible medications with someone who specializes in the head.
So hopefully all steps in the right direction.
Thanks for all the good advice.
Ogre
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LeLimey
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Re: Hello - been lurking
« Reply #10 on: Feb 24th, 2005, 6:35pm » |
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He is weaning you off the pred but has he given you anything else?
I hope it doesn't take long for you to get a neuro appt.
Let us know how you are getting on still please!
Helen
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KMT
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Re: Hello - been lurking
« Reply #11 on: Feb 24th, 2005, 8:08pm » |
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Wow Prednisone is definitly short term since it is a Corticosteroid It is ment as an antiinflammatory but to be honest if you are still having attacks while on it, its not doing its job. 
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aka...................................................... KimY
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LeLimey
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Re: Hello - been lurking
« Reply #12 on: Feb 24th, 2005, 8:13pm » |
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Hi Lost !
Nice to meet you! how ya doing? I think the reason the pred wasn't working for Ogre was that he was on a very low dose for CH.. you normally start on about 80mg from my understanding of it for CH and then taper. He has only been taking about 20mg which is a much smaller amount.
Hope that helps.. tell us a bit more about you!
Regards
Helen
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Ogregore
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Re: Hello - been lurking
« Reply #13 on: Mar 1st, 2005, 8:52am » |
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Just a quick update - haven't heard anything about referral to neuro, will be calling GP today.  The good(?) news is that after 4 days of reduced dosage, only daily shadows lasting about 20 to 45 minutes, no night visits so far.
See Ya
Ogre
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miapet
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Re: Hello - been lurking
« Reply #14 on: Mar 1st, 2005, 11:25am » |
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*YAY*
did you ask the gp about o2? if doc won't give you a script, then you can set up with a welders tank .. don't know what your insurance issues are ...
good luck and we're glad you're getting off the pred!
*positive light and energy*
miapet
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Clusterbusters Rock
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